Let’s Broaden ALS Research to Help Patients

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ALS clinical trials are usually quite narrow. They test one device or drug only, and exclude

Researchers dong a clinical trial. See a patient anywhere?

people who are already participating in another trial. They are often limited to people who are within two years of their diagnosis. This works great for the drug companies who want to prove that their drug works. But, like placebo-controlled trials when the disease has no effective treatments and is always fatal, this approach is not in the best interest of patients. I believe this can be changed.

I am currently in a trial of an ALS drug called dexpramipexole (dex). I also am interested in getting a diaphragm pacer to help

Sometimes we need a little help to do this.

me preserve my ability to breathe. (How basic is that?) Biogen Idec, the company that is running the drug trial, says it will drop me from the trial if I get a diaphragm pacer. I wouldn’t mind being dropped from the trial — which I’ve been since May, 2011 — except that it would result in my losing the chance to get the drug if I’m on the placebo. If I’m out of the trial, I will have to wait until the drug is approved by the FDA, which could be many months away. I don’t have that kind of time at my disposal.

I’ve been told that the drug trial will go to “open label” sometime this September. That means that people in the trial who have been on placebo (and no one in the trial knows whether they have been or not, nor do their doctors — it’s a “double blind” trial) will be able to get the drug while the trial continues. Since today is July 20, it seems likely that even under the best of circumstances, I would get the diaphragm pacer less than a month before the open label period starts. Under the company’s rules, that’s “too soon” for Biogen Idec. I find it impossible to believe that this month is as important to them as it is to me.

I sent the following letter to the CEO of Biogen Idec. I haven’t heard back yet. If you think this matters, and you would like to do something to change how ALS research is done,

Dr. George Scangos, CEO of Biogen Idec

please send a note to Dr. Scangos. His email address is gscangos@biogenidec.com

Please send me a copy of your note, and let all readers of this blog know if you get an answer by posting it here.

If we can change this practice, it will tell us the power of ALS patients to influence the direction and structure of other research.

************************************************************

July 19, 2012

George A. Scangos, Ph.D.

CEO

Biogen Idec

Via email to: gscangos@biogenidec.com

RE: Continued participation in the dexpramipexole trial

Dear Dr. Scangos:

I am 60 year old woman with bulbar-onset ALS, diagnosed in November, 2010. I am enrolled in the dexpramipexole trial through the Forbes Norris Clinic in San Francisco. I have been in the trial since May 31, 2011, and have complied with the follow-up appointment schedule, which, as you know,  is quite demanding for people with ALS.

I understand that sometime in September the trial will become open label, and all those currently in the trial who are on placebo will be able to get the drug. I hope, as you do, that the trial is a huge success, not just for me, but for everyone else with this devastating disease.

Like others with ALS, I explore many options to try to maintain my health as long as possible. I have decided that one way to do that is get a diaphragm pacer. I am eligible for the device, and am awaiting Medicare approval.

The staff at Forbes Norris tell me that, if I get the diaphragm pacer before your trial goes to open label, I will be dropped from the trial. If I get the pacer after the trial goes to open label, I won’t be. I write to ask you, in the strongest possible terms, to reconsider this position.

If the diaphragm pacer makes no difference to the trial’s outcome in September, I fail to see the rationale for excluding patients who get the pacer now or in the near future. Why would you want to discourage ALS patients from doing everything they possibly can to lead productive lives as long as possible? Isn’t that your company’s objective with the trial?

In my life before ALS, I was a breast cancer activist. What I learned in that role is that things change because patients demand change. I’m asking you to do the right thing: allow me and others who get a diaphragm pacer in the next few months to remain in the trial.

I look forward to your positive response.

Sincerely,

Barbara A. Brenner

© Barbara A. Brenner 2012

Posted in ALS, ALS Treatment, Health Policy | Tagged , , , , , , | 4 Comments

The Supreme Court on Health Care II — The Medicaid Debacle

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As you may recall, my most recent post expressed delight about the outcome of, and considerable skepticism about the motives for, the Supreme Court’s ruling upholding the Affordable Care Act. I return to that decision because the implications of the Court’s ruling on the extension of Medicaid are unfolding in very troubling ways.

What the Law Said Before the Court Ruled

Medicaid is a health care program for low income people. It’s run by the states, and, currently, the federal government covers a little more than half the cost. The Affordable Care Act, as written, required the extension of Medicaid coverage to people under the age of 65 (at 65, people are eligible for MediCare) who earn too much to be otherwise eligible for the program. (These newly eligible people are not rich, or close to it. The income cut off for a family of four is about $31,000.) The expansion of Medicaid — along with the individual mandate and subsidies for some individuals to enable them to purchase health insurance – was key to making sure more people who don’t currently have health care could get it.

To cover the costs of the expansion, the law provides that 100% of the additional cost imposed by the addition of new people to the program would be paid for by the federal government for the first three years. Thereafter, the states pick up an increasing percentage of the cost, but never more than 10%.

The law also said that stated that chose not to participate in the Medicaid expansion would

The classic carrot and stick approach. The Act used it to encourage participation in Medicaid expansion.

be penalized by losing the federal subsidy for their existing Medicaid programs.

What the Court Ruled

The Supreme Court’s decision said that the penalizing states that did not want to participate in the Medicaid expansion by depriving them of all their federal Medicaid funding is unconstitutional. If they participate, they get the huge federal subsidies for the expansion, but there is not penalty for not participating.

The Consequences

This is Justice Roberts. The smirk is that of a judicial activist.

Others have pointed out that the Court essentially rewrote the Medicaid section of the law in deciding the case, something courts are not supposed to do. (Remember, “judicial restraint” is supposedly a key issue for conservatives when they review judicial nominees.) As the impact of their decision plays out, the fact that they are not supposed to do it may explain why they did it.

The governors of some very large states with lots of poor uninsured people in them have announced that they do not intend to expand Medicaid coverage under the Affordable Care Act. Leading the pack are Texas and Florida. They are joined so far by Mississippi, Louisiana and South Carolina. Other states will likely join them. In Florida alone, that will leave approximately 950,000 uncovered people who would have had health coverage with Medicaid Expansion.

The governors cannot act alone. The state legislatures decide on the scope of the states’ Medicaid programs. But many of the states whose governors are saying no to expansion have Republican-dominated legislatures. Don’t expect the legislative debates to be any less morally reprehensible than the governors’ views.

If you need one of these, be sure the Governor of Florida isn’t holding it.

Consider this statement by the Republican vice chair of the Florida Senate Budget Committee: “Medicaid should be a last-resort safety-net program, and not a mechanism to reduce the number of uninsured. We have to hope our economy keeps improving and more people get back to work and therefore would have access to private health insurance.”  Medicaid is a last resort safety net program designed to guarantee health care for the poor. Expanding it covers more poor people, reducing the number of uninsured. Health care is the safety net. People don’t stay in the Medicaid program if they get jobs with health insurance. But hoping that happens is a very far cry from providing a safety net.

For the governors rejecting Medicaid  expansion, the position is an ideological one, not driven by financial concerns. After all, for the first three years of the program there is no cost to the states. The ideology is one that argues against federal programs on the grounds that  they amount to interference with the state’s self-governance.  The argument basically amounts to this: if the state wants to ignore the needs of the poor, they should be free to do so.

I believe that the Supreme Court, in ruling as it did on Medicaid, intended this outcome. It fits right into the philosophy of the right wing of the court (Roberts, Thomas, Alito, Scalia, and, too often, Kennedy) to undermine the federal government’s power to provide basic services when the states refuse to do so.

The Justices have a great health care plan. So do the governors, I imagine. I hope so, and hope their coverage extends to drugs to help them sleep at night.  For shame.

© Barbara A.Brenner  2012

Posted in Health Policy | Tagged , , , , , , , , , | 3 Comments

Wonders Never Cease — The Supreme Court’s Health Care Decision

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Since everybody and their cousin is commenting on the Supreme Court’s decision on the Affordable Care Act, I thought I would offer my two cents, for what they’re worth. Enjoy.

Will the Real Justice Roberts Please Stand Up?

I was very surprised by Justice Roberts. Having watched him vote his Republican, capitalist, protect-the-property-owners and corporations philosophy in many cases, I never suspected that he would be the member of the court who would save the health care act. I was at first pleasantly surprised, until I thought about it a little more. Sure, calling

Actually, the law imposes a penalty, not a tax.

the individual mandate a tax kept Roberts from voting with the Neanderthals and invalidating the law. But calling it a tax also saddles President Obama with having to explain increasing taxes. That’s just what the Republicans want to pin the President down with. Maybe it’s just a convenient outcome of the Roberts’ opinion, or maybe it’s more nefarious than that.

Crazy on the Right

Speaking of Neanderthals, what is with Justice Kennedy? Alito, Scalia and Thomas would never vote to protect the people, so their positions were no surprise. But Justice Kennedy knows better — and often votes that way. What possessed

Neanderthals have small brains. The Supreme Court ones have small hearts.

him to take the position that this law is unconstitutional under the Commerce Clause? I wonder. I really do.

Of course, the right wing is wondering the same thing about Justice Roberts. But they have a theory. According to Michael Savage, right wing talk show blatherer, Roberts upheld the law because he was undermined by cognitive side effects of an epilepsy drug he takes.

What Role Self-Interest?

Let’s assume for a minute that Roberts takes such a drug. At least it would be covered under the health care law. So maybe it was self-interest after all that drove Justice Roberts to vote to uphold the law.

It’s sort of like Justice Sutherland in Village of Euclid v. Ambler Realty Co., the landmark zoning case. Sutherland wrote the majority opinion upholding a zoning law that prohibited building an apartment structure in a neighborhood of single family residences. The story goes that Justice Sutherland had only to imagine an apartment building on his residential block to uphold the zoning restriction against such construction in Euclid.

Hijacking the Discussion: The Right Does It Again

Maybe the real surprise with this decision is not the decision at all, but that so many people believed it would come out the other way. When the cases challenging the health care law were filed raising the Commerce Clause issue, the argument was mocked by legal scholars. Not many people believed it would be seriously considered.

But the right wing was organized, and it wanted to win the Commerce Clause argument.   So the right did what is so good at: it got its version of the story into the press, through talk show hosts, Sunday talk shows, Fox, and print media. The press bought it uncritically, and the Commerce Clause argument took hold. It took such a strong hold that both Fox and CNN initially (and wrongly) reported that the argument had prevailed with the Supreme Court.

So the discussion of what the law requires was hijacked by the right, which was supported by the press. And the press coverage since the decision still focuses largely on what people on the right think.

Some of those people are showing up in comments on news articles about the Supreme Court’s decision. My favorites are the guys (and all the comments I saw were from men) who swear that since the U.S. now has a socialist or communist health care system, they are moving to Canada. I can’t make this stuff up, but I wonder if they know that Canada has a single payer health care system. We have a universal health insurance system. They are different, but these guys seem to not understand either system. I wish them well in Canada.

Moving Forward

The Affordable Care Act is step forward to getting everyone health care. It’s not what I want or what I think we need, which is a single payer system. But it’s better than what we have now: it will prohibit denying coverage based on pre-existing conditions, it bars life-time caps on coverage, it covers kids until they are 26 under their parents’ plans, and it will cover a lot of people who don’t have health insurance now.

What I wonder is how we can get the uninsured and the under-insured to recognize that this law will make them better off — and vote in November.

© Barbara A. Brenner 2012

Posted in Health Policy | Tagged , , , , , , , , , , , , , | 3 Comments

Previews in Health Redux

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Regular readers of this blog will have read my post a while ago called “Whatever Happened to Preview of Coming Attractions in Health.”  I return to the topic now to reflect on what I have learned since posting it, and to encourage more conversations on this very important topic. After all, most of us are likely to be seriously ill at some point in our lives.

This is the Facebook logo. If it’s not familiar to you, where have you been?

I’m active in several ALS communities on Facebook, and posted the earlier blog there. In response, a very helpful person posted information about an manual for people living with ALS published by the ALS Society of Canada.. If you’re interested, you can find it here.

In reviewing the manual, both my partner and I were struck by the level of detail and usefulness of the information, and disheartened that we had not been given this resource or anything like it by the specialty ALS clinic at which I am seen. The Forbes Norris Clinic where I receive care promotes a slate

The Hebrew 10 Commandments. These are useful.

of 10 Commandments for Optimal Motor Neuron Disease Patient Care, originally formulated by Forbes Norris himself. (In Europe, ALS is called MND – Motor Neuron Diseases.) It’s posted prominently at the clinic.

 

If you compare the “10 Commandments” to the Canadian manual, I think you’ll agree that the Canadians resource is much more helpful. Turns out that Canadians are good a lot of things besides hockey.

It’s been pointed out to me that the 10 Commandments were written at a time when there were no multi-disciplinary clinics for ALS. I have no doubt that, in that environment, it was helpful for care providers to be

Does this really help?

reminded that “positive thinking can heighten morale.” But this is 2012. Patients with ALS have no doubt heard about the power of positive thinking. It’s not practical advice, any more than is “keep the patient involved, informed and updated.” In fact, the 10 Commandments seem directed to the care providers, not the patients.

I have no doubt that staff at the Forbes Norris Clinic know most of the information in the Canadian manual. But I haven’t discovered any systematic or anticipatory way in which they share it. It’s the patients who need to be better informed.

To their credit, some of my care providers read this blog and my Caring Bridge site, and respond positively to my concerns. I’m told that I am not the usual ALS patient. Most people don’t want to know what’s coming because they get depressed. I’m sure this approach of not offering information until it is requested is not peculiar to the Forbes Norris Clinic. But the assumption that people — or their loved ones — would rather not know is just that, an assumption. Why not ask patients and their families how much they want to know and provide the relevant information? Or let them know that the information is available if they want it, and  whom to ask for it.

It is simply not helpful to ALS patients to tell them that some center across the country has a good guide, or that the ALS Association (despite all its funding) has symptom management booklets that need updating. This is the age of the internet and extensive

It’s really not hard to stay connected

communication among treatment centers. The professionals at the centers should vet the available information, and make it easily available to patients and their families.

And patients shouldn’t have to ask for the information. At every check up appointment, patients should be asked what information they need. And it should be given to them.

The Forbes Norris 10 Commandments say the patient is in charge. I would like to believe it. But to be in charge, patients need relevant information, provided n a timely manner.

© Barbara A. Brenner 2

Posted in ALS, ALS Treatment, Illness | Tagged , , , , , | 3 Comments

If you want to sign a letter calling on Nancy Brinker to resign

that was written by a former New York Komen Affiliate Board Member, email me at barbara@barbarabrenner.net, and I’ll send it to you.

Note that the letter says things I wouldn’t have written, but I signed because I believe Brinker has to go.

Posted in Uncategorized | Leave a comment

Susan Love: Time to Think Before You Pink

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There are many heroes and heroines in the world of breast cancer. You even know some of

Dr. Love, whose name appears on everything she does

their names. One of the best-known is Dr. Susan Love, author of Dr. Susan Love’s Breast Book, the excellent layperson’s guide to breast cancer issues. I have given that book to several people, and referred many others to it, as a clear and invaluable source of information for sorting out questions about breast cancer diagnoses and options for treatment.

Dr. Love stopped doing surgery some years ago, and now runs a foundation, called — you can guess it from the title of her book — The Susan Love Breast Cancer Foundation. Founded in 1995, its mission is “to eradicate breast cancer and improve the quality of women’s health through innovative research, education and advocacy.” (On the subject of the holy grail of “eradicating breast cancer,” see Breast Cancer Action’s Cancer Policy Perspective.) According to its last annual report, the Foundation has nearly $5 million in assets.

Eradicating breast cancer was not always the Foundation’s stated mission. In 2005, its stated mission was “to end breast cancer in 10 years.” I was then the E.D. at Breast Cancer Action, and had heard similar elusive promises from others many times. But I thought of Susan as more honest than most people in the field, so I was surprised. I emailed her to ask

Why does it always seem to come down to this?

from what year we should start counting the 10 years. She responded, “My board says when we raise all the money.” Oh yeah, the money thing. As 2015 approaches, the mission has changed. Either they didn’t raise all the money they needed or they saw that they couldn’t deliver. Surprise.

I have known Susan Love for a long time, and – despite her excellent book – disagreed with her about several things along the way. When we first “met” in 1994 at an on-line breast cancer forum, we disagreed about the value of breast self-exam. We still disagree about that. Susan says it sends women on a fearful “search and destroy” mission that doesn’t do any good. I say that discouraging women from knowing their own bodies is a dangerous thing, especially when about 1/3 of women with breast cancer find their own lumps.

But more recent events have intensified my disagreements with her. Here’s why:

Both Susan and I appear in the film that’s opening now across the country, Pink  Ribbons,

Open now or soon at a theater near you

Inc. In that film, Susan convincingly says we have to find the cause of breast cancer and stop it. In the film, she eloquently suggests that environmental research may be the key, and that people who want to support that kind of research should be sure that’s where their money is going. It’s clear to me that this call is for more funding for her foundation.

So far, so good, right? But Susan can’t really be that interested in environmental causes of breast cancer, because, if she were, she couldn’t accept some of the funding the Foundation has accepted or establish partnerships the Foundation has established.

I suspected as much when the Foundation announced to great fanfare its “Army of Women” approach to getting women involved in breast cancer studies. The Army was launched with the help of funding and publicity from the Avon Foundation.

(An aside: I was appalled at the name at the time — just what we need, another militaristic reference in the cancer world. See some discussion of this in a previous post.)

I was also pretty sure that the partnership was a direct result of the fact that Love was serving on the Avon Foundation’s Breast Cancer Scientific Advisory Board at the time. If you don’t think this is how funding works, think again. Look at the list of who serves on a non-profit research funder’s advisory board, and see if you don’t find many of those names also on the list of the funder’s grantees.

So, what’s the problem? Avon (the corporate parent of the Avon Foundation) refuses to sign on to the Campaign for Safe Cosmetics, and continues to use known or suspected carcinogens in some of their products. This corporate hypocrisy is also highlighted in Pink Ribbons, Inc.

My suspicions about Susan’s commitment to environmental health research were confirmed recently when Susan announced with great pride that her foundation has been

More war language

chosen to benefit from the Ford Motor Company’s “Ford Warriors in Pink Models of Courage” campaign. The Foundation will get the “net proceeds” (that means after costs are covered, so it could be little or nothing) of sales of things like Warriors in Pink: t-shirts, yoga pants, and sun hats, to name a few items. You can array yourself in much Ford Warrior in Pink apparel.

The Ford Motor Company is also featured in Pink Ribbons, Inc. Ford has a history of being the leading polluter in the automotive industry. And we know that some of things that are produced by internal combustion engine cars can increase the risk of many cancers, including breast cancer. Beyond that, the film includes a sequence that focuses on the elevated incidence of cancer in women who worked in automotive plastics factories, making parts for Ford. Ford’s purported concern about breast cancer is classic pinkwashing. And Susan Love is helping them do it. For shame.

Susan says in the film that she hates pink. But she partners with companies that are pinkwashers. Will the real Susan please stand up?

I invite you to join with me in calling on Susan Love to run her Foundation with the same integrity she exhibited in Susan Love’s Breast Book. You can reach her at slove48@gmail.com.

 

© Barbara A. Brenner 2012

 

Posted in Breast Cancer, Environmental Health | Tagged , , , , , , , , , | 27 Comments

Tobacco Company Lies Don’t Mean You Should Vote for Prop. 29

Apologies to readers who are not California voters. I need to talk briefly about Prop 29, the initiative on the June 5, 2012 California ballot. It’s a proposal to raise the state’s cigarette tax by $1.00 a pack to fund cancer research.

A little background before I get to my reasons for voting no on this proposition. The current tax on cigarettes in California is $0.87 per pack. That’s not the highest (in fact, California ranks 33rd among the states; the highest tax is $4.35 per pack in New York), but it’s pretty high as a percent of the cost of a pack. A few years ago, when this initiative was first contemplated, a study was done of the impact of raising the tax. The study found that increasing the tax would drive more smokers to the black market to buy cigarettes and that revenue from the cigarette tax would actually decline.

I have no reason to believe that that study would lead to different results if done today, given the economic realities that most people are facing.

But even if increasing the tax would generate more revenue for cancer research, I would still vote no. Here’s why.

Cancer research has been very well funded in the U.S. for about 50 years. We have no idea how much the total dollar amount is because there are so many agencies, organizations and companies doing the funding, but it’s in the big multiple billions, if not trillions, of dollars. What do we have to show for it? Not much, given the investment. So, rather than pouring more money down the black hole of cancer research, let’s spend some effort to get accountability for the research we have already so generously funded.

And, while I have no doubt that tobacco companies are lying about the impact of this initiative, I note that the major sponsor is the American Cancer Society (ACS), which has been lying to the American public about many things about cancer — from what constitutes a cure for cancer to what mammograms do and don’t do — for as long as it’s been in existence. I don’t trust the ACS either So, a pox on both their houses.

Vote No on Prop. 29

© Barbara A. Brenner 2012

Posted in Health Policy | Tagged , , | 6 Comments

Odds and Ends in the Pink Ribbons Wars

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The Language of Cancer

You know doubt have noticed that the language of cancer is drawn largely from a bellicose framework. Women with breast cancer are “fighting” the disease. Women who die have lost their “battle” with cancer. The federal government runs a “War on Cancer.” The drugs available to treat the disease are called — I didn’t make this up — the “armamentarium.”

Maybe the war language is meant to remind us that, like the war in Afghanistan, or the

The War on Cancer Needs You

Second World War, we can never give up, because giving up means not winning. Maybe it’s also meant to remind us that, like all wars, this one is expensive, so we’ve got to give to keep it going.

Advancing the War: More Pink Silliness

Of course the easiest way to support the cause, as we’ve been repeatedly told, is to buy something with a pink ribbon on it. Or, almost as good, carry something pink to show how much you care about women’s lives.

It seems the silly season in pinkness arrives annually now with Mother’s Day. After all, if you care about mothers, breast cancer should be your cause, shouldn’t it? (Things like economic security, child care, or education never seem to make the grade on Mother’s Day marketing for some reason.) This year, as in other recent years, the silly quotient was maxed out for me with major league baseball players, using pink bats in Mother’s Day

They really use these

games.

Can anyone tell me how using a pink baseball bat will change anything in breast cancer? Or anything at all having to do with women? An activist colleague noted that the teams don’t use

They don't use these

pink baseballs, maybe because that would be too emasculating. But pink bats and batting gloves — “real” men use them.

While Major League Baseball — of which I am a fan — has had its challenges with public perceptions (like the steroid use issue, for example), it looks like a goody two-shoes compared to the National Football League. Several years ago, in an effort to distract people from the criminal activity of many of its players — often involving violence against women — the  NFL got into the pink game with pink cleats, head bands, and players’ gloves.

The NFL effort was encouraged and enabled by none other than Nancy Brinker, founder and leader of the Susan G. Komen for the Cure Foundation. A little like the Midas of breast cancer, everything Brinker touches seems to turn pink.

Komen Departures Mount, But Brinker Stays

It seems that Ms. Brinker is determined to hold on at the Komen Foundation until she either drives it into the ground or dies trying. In the latest departure from the executive ranks at Komen, Leslie Aun, long-time VP of Marketing and Communications has left the organization. While she declined to give a public reason for her departure, I have some evidence that she left because Brinker wouldn’t.

I know how the Komen email addresses are set up, so I periodically send messages to members of the leadership. Not surprisingly, I have never received responses to these missives. Nevertheless, ever persistent, I sent an email to Leslie Aun on a recent Saturday. My motivation in doing so was to respond to a quote from her in a review of the film Pink Ribbons, Inc., saying she hadn’t seen the movie. I wrote to suggest that she see it, if for no other reason than that she would want to see Brinker’s performance in it. I closed the message with my view that Brinker should resign.

After I sent that email, I read in the New York Times that Aun had submitted her resignation. Imagine my surprise to get an email response from her indicating that she had been trying unsuccessfully to get Brinker to resign.

Learn More, Support the Cause

I don’t want anyone to think that because pink marketing has gotten beyond ridiculous or Komen has lost its way, they shouldn’t support the breast cancer cause. While it’s true that more women die of lung cancer and heart disease, they don’t die at the young ages that so many women with breast cancer do. And the problem is so far from solved that we have to keep working until we can say with confidence that the next generation of women is not facing the scourge that ours is.

There are many breast cancer organizations that deserve your support. My favorite is Breast Cancer Action probably because I led it for 15 years, and I agree with the organization’s vision and applaud its integrity and its work. If you are interested in supporting Breast Cancer Action while at the same time learning more about how the breast cancer movement got diverted from activism to shopping, here’s a great opportunity for folks in the San Francisco Bay Area:

On the evening of May 31, Breast Cancer Action is hosting a fundraising sneak             preview of Pink Ribbons, Inc. Information and tickets are available here.

And wherever you live, don’t miss the film when it opens soon, hopefully in a theater  near you.

Communicating With Folks at Komen

By the way, if you want to send messages to anyone at Komen, the way their email addresses work is first initial no space last name @komen.org. So for example, the email address for Liz Tompson, Komen’s President, is eThompson@komen.org. If you send a message and get a response, be sure post it here.

© Barbara A. Brenner 2012

Posted in Breast Cancer | Tagged , , , , , , , , , | 5 Comments

What Ever Happened to Previews of Coming Attractions in Health?

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Anybody who knows about ALS knows where those of us with the disease end up. But there are steps along the way that can be anticipated, and, if anticipated, dealt with to minimize discomfort. As I thought about my own situation recently, I realized that there are lots of ways the medical profession could help people if they would just communicate about what’s coming.

And I don’t mean doctors saying what they think will happen up, as doctors sometimes do. We all know, don’t we, that doctors are

Not a doctor

just people with particular training that doesn’t include training in clairvoyance?

But there are things medical people actually know that it would be helpful if they communicated. Here are are a few examples of how that might work. All are taken from my own experience or the experience of friends.

What Happens to Your Feet When You Can’t Walk So Much?

A couple of weeks ago, my feet started swelling up. When the swelling didn’t go away, I emailed the terrific nurse at the Forbes Norris Clinic, where I’m seen for ALS, and asked what might explain it. The answer was: dependent edema, when fluid builds up in appendages that are mostly idle. It’s like being on  a 25-hour airplane ride. So, as ALS

The fun way to get edema

progresses in the legs, making it harder to walk, ALS patients like me walk less, and their feet swell.

While I was distressed by the symptom, I was more unhappy that no one had told me that it might occur, or what could be done either to prevent it or make it go away. Turns out that a pretty straight forward lymphatic massage that my yoga instructor/Thai masseuse suggested is really quite helpful for reducing the swelling. And the clinic nurse knew about feet and ankle exercises to reduce the risk of swelling.

If we know that dependent edema happens, and we know it happens in people who stop walking much, and we know that people with ALS stop walking much, why don’t we tell them that it might happen and give them the tools to minimize it and treat it if it does occur? The medical profession should not make the patients come to them complaining about things that can be anticipated. We have enough on our hands.

When Is It Useful For People With ALS to Record Their Voices?

People with ALS lose the ability to talk because the muscles that control speech stop working. Sometimes this is how ALS first manifests. It’s called bulbar onset.

Fortunately, some speech pathologists devote their lives to helping ALS patients. They know a lot of things. One thing they seem to know is that there are ways to record your

There's better technology now for voice recording

voice while you still have it so that the sounds can be used in text-to-speech programs that exist.

Of course, this is only possible while a patient can still talk reasonably well. By the time I was told about this option, I wasn’t one of them. Information that might have been very helpful if given in a timely manner.

How Long Does It Take to Recover From Abdominal Surgery?

Abdominal surgery isn’t rare; a lot of it is done every year. As a result, there’s a lot of experience that can tell us how long, on average, patients take to recover from the surgery to the point where they feel like their normal selves. So why don’t surgeons tell patients how long it will be?

A friend of mine recently had emergency abdominal surgery for an intestinal adhesion. Very scary. After the surgery, her surgeon told her that she could go back to work in a few weeks, and said not one word about how long her recovery time would be. The medical excuse her to explain her absence from work was only good for those few weeks.

If a doctor tells you that you can go back to work two weeks after surgery, isn’t it rational to expect that time frame to bear some relationship to recovery time from the surgery? In fact, it was nearly 6 weeks before my friend began to feel recovered. Is it that the doctor didn’t know, or that he just wasn’t telling? Either answer is simply unacceptable.

Does a Double Mastectomy Reduce Your Risk of Breast Cancer to Zero?

We know the answer to this one, and it’s “no.” Because we have much more breast tissue than mastectomies can remove, there remains a small but measurable risk of breast cancer even after the surgery.

I heard recently about a woman who asked her oncologist this question, clearly hoping that the answer was yes. Indeed, that’s the answer the doctor gave. I know this oncologist and I know he knows that his answer was wrong. Whom did he think he was protecting? Why is the truth so hard to tell?

Duty to Warn?

Each of these examples points to a failure in the medical community both to realistically anticipate and communicate with patients about conditions or situations that can be easily

Challenges ahead

anticipated. In the legal system, there’s a duty to warn people who might reasonably come in contact with dangerous products or conditions that those dangers exist. Doesn’t the medical community have the same duty? Shouldn’t it?

 

© Barbara A. Brenner 2012

Posted in ALS, Breast Cancer, Illness, Medical Science | Tagged , , , , , | 5 Comments

Changing the Culture of Health Care in a Consumer Society — Not So Easy

If you like this blog, pass it on to your friends. Let’s keep the conversation going.

On April 4, 2012 there was a lot of excitement in the press about the fact that nine different boards of medical specialists are now recommending that doctors do fewer tests on patients. The specialties include family practitioners, cardiologists, radiologists and

A group of doctors. They like making recommendations.

cancer specialists. Though recommendations to do less testing have been made before and intensely resisted — note the U.S. Preventive Services Task Force  recommendation in 2009 to do less mammography screening — for some reason, the fact that medical specialists are making the suggestion now stimulates hope that change will happen. I’m not so sure. Here’s why.

The Culture of Health Care in the U.S.

You may have noticed that, in this country, we seem to approach health care like other commodities: I need or want it and I’m going to get it. There’s a reason we’re referred to as health care “consumers.” (Some years ago, Fran Visco of the National Breast Cancer Coalition labeled women with breast cancer as “breast cancer consumers.” Don’t try to dissect the phrase; you won’t like what you find.) People who

A happy health care consumer

have resources, who are driving the high cost of medical care, see health care as a thing they’re entitled to have, no matter what it costs or whether it has more benefits than risks. And “health care” has come to include all of the tests, drugs, and procedures that might be available to address a medical issue.

This culture has been helped considerably by the internet, where patients can find information on all sorts of medical care

On of many on line medical information sites.

that might or might not work. And the culture has become so ingrained that doctors now fear medical malpractice lawsuits when they decline to order a test or a drug that a patient wants.

Will doctors refuse to prescribe a drug or a test that a patient is demanding just because their specialty group has said, “don’t do it?” I doubt it, because the consequences of not prescribing the thing are much more concrete than what might happen to the doctor if  s/he ignores the specialty group’s recommendation. If you were a doctor, would you fear more the patient’s complaint (and even law suit) or the knowledge that you are going against you medical specialty’s recommendation, possibly justifying your behavior on the grounds of precaution?

The Role of Patient Advocacy Groups

The cultural drivers toward more and more care are supported by many health advocacy groups focused on specific diseases. From the breast cancer organizations that urge frequent mammograms, to the prostate cancer groups that insist that a PSA test will save

Patient advocacy groups have lobbying alliances.

your life, to the lung cancer groups urging screening with spiral CT scans, to the osteoporosis organizations urging annual bone density tests and pills to address risk rather than disease, the push for more interventions is unrelenting.

Often, these groups receive funding from the drug companies or device manufacturers that sell the things (medication, devices, testing equipment, lab facilities) required for the interventions the groups promote. In other settings, this would be a conflict of interest.

Don’t think for a moment that groups whose existence is premised on a belief in a medical test will go quietly away if doctors try to do less of the test. The outcry every time there is a call for less mammography or less PSA testing is a testament to the power of these organizations to mobilize people to protect their turf.

Role of Industry

Another driver of the health care consumer culture in this country is the companies that make drugs and medical devices. You are well aware that they are in the business of making money. One of the ways they do that is by getting consumers to demand things of

Your t.v. doesn't look like this, but the ads do

their doctors. They do this by advertising their products to consumers. Direct-to-consumer advertising of drugs, which has been happening in the way it is now in the U.S. since the 1970’s, has helped drive demand for and consumption of medical care off the charts.

One of the reasons patients demand so much of their doctors is because the drug companies tell them to. You know: the ads that end with, “Ask your doctor.”

Want to Change the Culture? Ask Different Questions

If you want to change the culture of health care, think about asking different questions like:

— Do I need this treatment? Will it help me? What percentage of patients who                  receive this treatment benefit from it? How great is the benefit? What are the                  risks?

— Is the test or treatment my doctor is recommending one I need? What’s the                  purpose of this test or treatment? Does it address a condition I have?

— Is the advocacy group that’s recommending this device funded in part by the                     manufacturer?

— Is my Congressional representative committed to ending direct-to-consumer                drug advertising?

The doctors alone can’t change the culture. We all have to do it.

P.S. Speaking of culture change, don’t miss Pink Ribbons, Inc., the film that is changing the culture of breast cancer, when it comes to a theater near you.

© Barbara A. Brenner 20

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